If I only had 10 more years to live:

If I only had 10 more years to live:

The phone finally rang – two days, three hours and fifty-seven minutes later than it should have. I was a shredded pile of emotions from the waiting. She took an infinitely long breath, cleared her throat, and dealt the blow: It is as we feared – lymphangioleiomyomatosis. I know what you’re thinking: that’s not a word, it sounds like a kindergartener made it up. It’s most definitely a word and it’s definitely no joke. While initially I was relieved that it wasn’t the “C” word – the one disease we’ve all learned to respect – now I’ve come to wish it were. I remember learning in nursing school that cancer should really be viewed as a curable disease. Many times people with cancer receive successful treatment and are cured and we need to stop thinking of that diagnosis as the kiss of death.

Not so with lymphangioleiomyomatosis (or LAM, its kinder acronym). It is not curable. In fact, “they” – those great minds of the medical elite – make no concessions about that. “They” don’t even know how you get it or how to treat it. Paul and I have been to multiple physicians and even drove across the state to the University of Michigan and talked to the most special specialist who specializes in LAM. I have also now read from nearly hundreds of websites – six weeks since I first heard there was an evil in the world called LAM. Six weeks since “they” first suspected I have it.

I am 47 years old. I basically feel healthy and strong, but for years I have wondered if I was more short of breath than I should have been. Although I can walk for miles, I couldn’t really carry on a conversation while walking, and try as I might, I was simply unable to run for lack of air. I blamed it on being 20 lbs overweight and vowed that someday, when I finally got in shape, I’d run a marathon. I was also more tired than I wanted to be – but I blamed that on four kids, multiple moves overseas, middle age, and an affliction that makes me unable to say “no”. And, apparently, I cough. It doesn’t bother me any, but I’m finding out my loved ones have noticed it (a lot) and find it rather annoying. But I would have sworn to you I’m not sick – just, well, a little bit not quite right. But now “they” have assured me those are all symptoms of a disease which initially lets you appear healthier than you are. I guess LAM has started to take over my lungs and moved toward my kidneys. And slowly, I will find it harder and harder to breathe until I simply cannot. “They” say this takes, on average, ten years.

Where does one even begin to process that? Before we even started telling family and friends – or our own kids for that matter – I was thrust, unwillingly but entirely necessarily, into a mind-numbing exercise of trying to make sense of all that is life, and all that is death, and how to fully live in every gifted breath. I hope, and believe, that as my plus or minus ten years progress, I will discover more about the meaning of life and that I can exit this reality with more peace than I have today. Because today I’m still a bit of a mess.

One day, or maybe it was night (they’re all a blur lately), while being swallowed both in self-pity and a sea of snotty Kleenex, I decided someone with a terminal illness should probably make a bucket list. Ten years is not near enough time to do all the things you thought you had 40 years in which to do them. My list included many things one would expect to see on a typical bucket list: see “Wicked” on Broadway, visit Machu Pichu, walk the great Wall of China, run a marathon, see Coldplay in concert, hike the Himalaya’s, learn to speak Spanish, sky dive, etc.

But before I even got to #9, I had a revelation. I realized that if I really only had 10 years left, I better first figure out the pointto this life and then waste no time trying to get there. I don’t really have time for pointless activities – unless of course they were done with people I loved – but then, that would be the point. The more I thought that through, the more I was convinced I couldn’t (wouldn’t) make a bucket list full of typical things one does before one dies. Because, I reasoned, those typical entries were all deposits made into “ME”. Places I wanted to go, wonders I wanted to see, things I wanted to do – all of which, are all for ME. With only 10 years left, why would I only make deposits into ME? When I die, those deposits all die with me. The only legacy one can possibly leave behind that makes any sense at all is a deposit into OTHERS. What I really must do for the last 10 years is pour whatever energy I have left in me into other people. In my less selfish moments, when I’m not grieving over the fact that I will be robbed of maybe 20 or 30 years on this planet, I have concluded I must spend my years sharing the love that I believe can only be found in Christ Jesus my Savior. I want to live like Him – just extravagantly loving others and pouring myself out for them.

So, this is my better bucket list:

I want to spend as much time with my four children as they’ll allow. I’m aiming for a melange of Carol Brady, Claire Huxtable, Maria von Trap, Mother Mary, and Olivia Pope – praying that even a sliver of good in me can be majorly multiplied in them growing them into good, kind, compassionate, hard-working, self-less givers who are musical, wickedly smart, and forceful world changers.

I want to be spending unhurried time over long lunches with friends who feel like they’re being trampled from the hurried masses, beaten down by the world’s injustices, or crushed by the pressures of a culture run amok – and simply listen. We’ve all got crap we’re dealing with – but we don’t often find good listeners with whom we can safely spew our crap. Dear Lord, make me a big crap loader.

I want to walk Buddy, my Holy Spirit she-dog, through the trailer park and let all the children (some who, I fear, are bearing physical and emotional wounds from their tired, over-worked, and underpaid daddies) pet her and play with her and forget their troubles for just a few moments.

I want to spend unsolicited coffee-time with my sweet and self-less mother-in-law who is slipping away slowly and barely remembers my name these days.

I’m going to be all about letting my 12 year-old daughter climb up on my lap even though she is entirely too old to be doing that sort of thing, but entirely able because she is from Guatemala – a country where they just make smaller people.

I want to drink wine with our friends until we’re giddy and foolish and we let some buried things bubble-forth and then we laugh and cry together as we realize this was the very therapy we needed.

I want to take longer showers (My husband must be thinking: is that possible?) – but like most people, that’s where I get my best revelations. Often, I feel God reveals to me random people from my past which feels like a prompting to reconnect: Kathy Henderson from nursing school, Diane Marker from Davenport, Stephanie Saumon from Aix-en-Provence, Julie Jones and Stacey Johnson from Casablanca and countless others – where are you now, my sweet friends? And do you randomly think of me as often as I randomly think of you?

I want to keep visiting our poorest of poor friends in Morocco and just sit with them, accepting their extravagant generosity, while we wrestle with the pain of how much we have and how much they have not. And loving them deeply, without necessarily fixing their problems.

I’m going to keep a large bag of Snickers in my car at all times so I always have something to give a pan-handler. Since I am running out of time, it doesn’t look as if I’ll be able to solve the problem of poverty and homelessness in America – or for the rest of the world for that matter. And that beats the hell out of me because I so wish I could. But possibly, for this moment, on this day, for this one person, I can at least hope to spread a flicker of sunshine. Besides, who doesn’t love Snickers?

I’m going to work hard at forgiving those who wounded me unintentionally. Harder yet – forgiving those who hurt me intentionally. And why stop there? I want to bless them, too.

I’d like numerous fireside chats with our neighbors making time for sharing stories. But also watering their flowers, feeding their dogs, eating their cherry tomatoes, giving their kids popsicles – so they are much more than “the people with the white car”, but they are fellow sojourners whom we actually share life with on our little cul-de-sac in Hudsonville.

I think I’ll watch more comedians. Brian Regan, Jim Gaffigan, Stephen Colbert (don’t judge) and Tim Hawkins – these will be some of my new friends. I just want to laugh, in a room full of people I love, because I think laughter is music to God’s ears. And bonus, I’ve heard a good hard belly-laugh can burn upwards of 100 calories.

I’d like to keep working at my job at a psychiatric hospital – because I believe I have been called to serve the marginalized in society. I feel so honored and privileged to care for these misunderstood people – I’d even be willing to work there for free. And I now see how the soul begins to die when we stop serving others – which is a much worse death than the physical one.

Because of that last one, I think I’ll return to the homeless shelter where I interned last year and start volunteering. I’ve never felt more alive than when I walked through those doors and breathed in deep the aroma of desperate need colliding with God’s love in action.

I want to spend countless afternoons watching the sparkles accumulate on the lake as the sun descends in the sky, and then, because we’re too ensconced to get up and cook a proper meal, we’ll just throw all the food from both of our refrigerators onto the picnic table and feed all the kids left-over chicken wings, string cheese, a head of lettuce and a can of baked beans. I want to laugh and eat s’mores and drink wine around the campfire until our sides hurt too much from laughing and the mosquitos chase us away.

I want to have ice cream for dinner – repeatedly throughout my remaining summers – buying about 20 gallons too many so that we can take all the extra gallons to the trailer-park to spread smiles.

I want to spend time at my local nursing home and find out which residents never get any visitors. And I want to sit with those lovelies and let them talk endlessly about their childhoods, their children and grandchildren, their careers, their legacies – until they run out of stories or break into song with “How Great Thou Art”. I used to work there – I know how it goes.

I want to pull out my memorabilia from high school and college and spend a whole day, or perhaps a whole week-end, with my high-school sweetheart, who both miraculously and graciously married me, and together read through all of our old hand-written love-letters to each other. And I want to revel in the beauty of 27 shared years. Twenty-seven. That’s a pretty big number when you’re talking years.

I want to read a ridiculous amount of books. I know that seems contrary to what I said earlier about investing in others and not myself – but I also believe this truth: When we live out the life that God destined us to live and we become who He created us to be, He is glorified. He made me a reader and a writer. And when I read, I feel His pleasure.

I want to plant trees. Is it just me or have others noticed that the trees are dying? When we returned from living in Morocco, I was hyper-aware of dead trees everywhere – way more than when we had left 4 years prior. I think it’s continuing to get worse. I think I’ll plant at least one tree for every year God gifts me here. At first, I felt like this one wasn’t an investment into people, but now I think it is.

If my lungs will allow, I want to take several trips to Guatemala or Honduras – two countries that are home to many people we know and love. And on these trips I want to take bunches of people who have never left the USA before, and introduce them to the “real world” and hope and pray that they get it, absorb it, and live differently because of it. That’s what changed us, anyway, and I’d love to keep paying that forward. Even though it wrecks you for good.

I hope I’ll never watch another reality TV show – perhaps any TV show for that matter. I don’t find the point in it at all. Unless, of course, it is “24” with my husband and our two sons and we’re all death-gripping each other’s hands on the couch, or “Downton Abbey” with my two daughters curled up under the same blanket with me.

I don’t know, but I think with only 10 years left, I’m going to give up dusting and vacuuming. Those two things seem equally pointless and just time-suckers – time better spent with people. I need to be about making a point. I bet they don’t dust and vacuum in the Congo. I’m contemplating throwing out cleaning toilets as well – but more undecided on that one. I still have nightmares about the toilets at Paul’s college residence after just ONE year with no cleaning… I swear I got bit in the butt once by some kind of toilet vermin.

And I’m going to write that stinkin’ book. It doesn’t matter if it is ever published or even gets read for that matter, it just matters that our story gets told. We all have a story and they are all too good to not be told. The five reasons this bucket list entry is for others and not for me are named: Paul, Andy, Josiah, Grace and Yulisa.

In fact, I’m going to write everything down on this journey. And I’m going to share it openly not caring what some negative people may say anymore. I’m done with letting words hurt me, and I just don’t have time for that anymore. The only way I can be hurt now is if someone would steal the set of lungs that I might need for a transplant.

And then, hopefully, if I still have energy left after all that, I want to devote serious time, money, and creativity in bringing awareness to LAM. Because it’s so rare, it doesn’t receive the research monies a terminal illness deserves. It still has no cure, and it is silently killing many women in the prime of their lives with average age of diagnosis around 35. I cannot possibly understand the mercies of our God – but mercifully, He has allowed me to live this long, well into my 40’s; and hopefully, He grants me another 10 years. But many other women with LAM do not live long enough to even see their first grey hair or their children graduate from high school. I want to tell everyone I know about LAM, and trust that somehow, somewhere, someone out there exists who will discover the cure.

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52 thoughts on “If I only had 10 more years to live:”

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This is so beautiful. We are heart broken over your diagnosis but praying for you, rooting for you, and alongside you for the journey. You are an amazing person and someone I've always looked up to from afar. God bless!

So thankful you wrote! So thankful I found it the first thing on my computer on Christmas morning! So thankful for a grocery store appointment! So thankful we have been affected by both you and Paul! So thankful for redeeming work of our Father! So thankful for the reminder of a life not lived for self is one that leaves a legacy, a reminder much needed for my heart Cindy!! So thankful you put it all out there leaving only faith and love left!

Cindy, I so miss the days when we hung out when Bridgette & Grace were little. I wish we could go back to that place. Thanks for sharing your life with us. We feel blessed to know you. Love & prayers to you and your beautiful family.

Cindy,Your STORY is just beginning! I am so glad you are starting this blog. You are such a good writer with words that are honest, thoughtful, descriptive, and evocative. I promise you that when you finish your story, I will make sure it get's published. I also offer to go to many more STORY conferences with you whenever you want. We are in this for the long haul Cindy and I know I speak for many, if not all here 🙂 We will never give up hope and will live life to the fullest with you. No one really knows when their last day will be here on earth my friend, except God. I promise to be with you EVERY single step of the way 🙂 And Cindy, you still do have it all!!!! Great family, friends, memories, and our God 🙂 who will never, ever forsake you. You have found the key to what life is all about and have been living it whether you've known about it or not. God cares for you Cindy, now and forever, and loves you always! I love you and feel so blessed to have been a part of your life with many more years to come. You have given so much of yourself for others and now you are going to continue doing that, but with the extra added benefit of seeing life how we all should by living it fully in the present and by not making excuses for putting things off in the future. I leave you with my favorite Bible verse….Matthew 6:25-34. It's too long to write here, but it helps me get through some tough days 🙂 I love you Cindy Lou and ain't nothing gonna stop me 🙂

Dear Cindy, My husband and I read your blog on Christmas Day while we celebrated Christmas with our team in Uganda. My husband knows your husband Paul, but you may not know me. I want you to know there are people across the globe praying for you and people on the other side of the world who have been challenged, encouraged, and inspired by your sharing. Love and Prayers, Michelle

Cindy–As I read your blog, I am inspired, challenged, tearful, grateful, and hopeful. I anxiously await the book that you are writing (that I have long been telling you you must write!!) to be published!! I want to take that trip to Guatemala (again!) with you. You were the person that inspired us to go the first time. Can't wait to go there or to Honduras with you once again. When I spoke with Ben before Christmas, he had his friend, Hannah, from Australia, chatting with us also. We were talking about you and Hannah said, “Oh, your friend, Cindy! We have been praying for her!” Tears filled my eyes as I realized that a group of young people in YWAM are praying for you in London!! Wow–you are touching so many lives. I am so thankful for that. Hoping your time right now in Morocco with your family is rich and deep with old friends and new memories! Love you deeply–Kathy

What an inspiration you are Cindy! For me especially, and for others. I needed to see this today. God's timing is not my timing. My prayer is others will see Christ in and through you and their hearts will be open. XO – Merri Lynn (Dunham)

Cindy, Your blog totally stopped me in my selfish tracks today! I am so very heartbroken about your diagnosis and will keep you in constant prayer from this moment forward. I believe that there will be many more than 10 years left in your life. With all of the research and technology in this great world of ours, surely there will be a cure- a method of healing you from this ailment. I remember spending our younger years together and somehow remember vividly the days leading up to your courtship with Paul. I won't go into full detail in this forum as to the shenanigans that went on, but suffice it to say that Paul was enamored by you from that day forward 😉 I always admired and really envied your lust for life and your lively spirit! Certainly your fire hasn't been dampened at all! You have done so much in your lifetime to help and inspire others and are continuing to do so. I am here as your biggest cheerleader from this moment on. Keep on writing because I can't wait to read more and be touched by your unbelievable courage (and uber wit and humor). xoxo– Julie (VerHage) Moraitis

Cindy, I am just heart-broken by your news and I know there will be many ups and downs both emotionally and physically. I am praying for you and your family…that God will create a miracle (utilizing some researcher's brilliant and God-given mind) to save you before your 10 years are up. Until then, I know God will use your beautiful spirit to fill this world with his love and grace. Hugs & Prayers!

Cindy, I don't know if you remember me, but I remember you! I think of you everytime I drive by your parents house. You are an inspiration! I'll let Diane Marker know about your blog. You are in my prayers Marla Hibma Pattock

Welcome to the sisterhood that honestly I wish we were not a part of. live in a Kentwood, Michigan. First and foremost I am a sister in Christ and a strong believer that God uses any and all circumstances for His Glory and honor. My cousin shared this post with me, because I also have LAM. I was diagnosed 4 years ago. I have seen such amazing blessings in the ability to live knowing my life will also be shortened greatly by this disease. I am the Michigan Liaison from the Lam Foundation so if you ever need some one to talk to, meet with, complain about crap, or be prayed for please reach out. There is also a very large group of women fighting this disease on Facebook if you ever would like to be connected. Praying for you as you discover God's amazing blessings through this. I always amazing when I say LAM it's that special reminder to me that I am His Lamb. My personal email is lamaliscious@gmail.comJeane

So….here I sit, looking west across the field. There's Paul & Cindys house…and if I really,really look hard I can still see the old Ice Hockey rink. And over the trees a little south, there is Harv & Lorraines house. Then looking out East and a little south, thru the trees a little, there is Gerald & Bea's house. So many memories. You two were such a blessing to the “Grove” when you lived here. I am trying to put into words how I feel, and I just can't. I know you will be an inspiration to all you come in contact with in the future years. You really should write a book. Reading your blog, there is talent there. Our thought and prayers with be with Cindy, and Paul too. God BlessPaul & Judy Baar

Cindy, Your love for God and desire to please Him in all you do is an inspiration to all of us. Let us all join you in this lifestyle. You and those you love and love you will be in my prayers. I know God will bless you and in His amazing and unfathomable way, He may have blessings for you that are unimaginable-perhaps a cure. He is the Great Physician and cares for us according to His will for us. May you feel His love, comfort and support. Your neighbor for many years. (Country neighbors may live miles apart).

Cindy, you don't know me but I graduated with your husband. I just wanted to let you know that you and your family will be in my prayers, Always believe that God is Good and He will guide you and your family on this unknown journey you are facing. God Bless you all! Rhonda Meyers

Hi Cindy. My name is Susie. Your blog was shared with me this evening, and as I read through it I recall the sadness and fears I felt when I too was diagnosed with LAM (in 2001). I felt compelled to share with you that because LAM is so very rare, (many doctors have never even heard of it) some of those who have heard of LAM are not up to date on current thought about this disease. It is now believed that the average woman lives 29 years from the onset of symptoms. There is now a drug treatment available that significantly slows progression for many women. I do not mean in any way to belittle or push aside your fears, for I know that LAM will certainly impact your life and that of your family and friends — but it is no longer considered a “death sentence” or the start of a “ten year time clock” ticking…Receiving a diagnosis of LAM (or any chronic illness) certainly can prompt us to reset goals and to prioritize things. It can change our perspective and allows us to evaluate what we think is important. Your bucket list is so thoughtful and amazing! I'm happy to see from the other comments already posted that you have a support system in place. I hope you will also consider contacting The LAM Foundation; this is a non profit organization dedicated to funding LAM research and also serves to educate and provide emotional support to LAM patients. You can read more about the Foundation online at http://www.thelamfoundation.org/ In addition, there are support groups available on Facebook. There is a private group that you can request to join called “Lammies” which is only open to women with LAM, and another open group called “The LAM Foundation Community” for patients, family and friends. Know that there is a large sisterhood of women, all sharing this same journey, that are available to talk to if you'd like. If you have any questions, feel free to contact me as well.

Hi Cindy, I am Cathleen from Asheville, NC. A friend of mine in Denver posted your blog on FB and it caught my eye because I have LAM as well. I am sorry you have joined this exclusive group of women, but I want you to know that you WILL be able to live lots and lots of the life you so beautifully describe in your bucket list! I, too, am a sister in Christ, and my faith helped me endure the day in 2004 when I was diagnosed and read online that I had 2-5 years to live! (Of course, I focused on the 2!) Research has revised those numbers drastically upward, praise the Lord. In spite of that good news, LAM stinks, although, as I'm sure you know, God does work all things for good. My husband and I lived in Colorado for 23 years and had planned to retire at our small ranch in the mountains with our horses. However, 9,000' elevation + LAM = an unhealthy life for me so we sold everything and moved to NC where, I am so glad to say I am thriving! We love the Asheville area and can't imagine living elsewhere. Like you, I am a RN. My specialty was peds although I also attended Denver Seminary and studied Christian counseling. So, we have several commonalities. I will pray for you that in these first months of living with LAM you find emotional, intellectual, and, especially, spiritual peace about your diagnosis. Please reply if you think I might be of help in any way.

Dear friend, after all you have gone through this year, and now this! My heart breaks for you. I hope I bump into you soon to give you a huge hug! Please know that I am praying for you, Paul & the clan and if there is anything you need, or someone to talk to, you know where to find me. You can dump your pain and I will listen and keep your wine glass full.Love ya!Mike

Amazing, Katie – because you're someone I have looked up to from afar! You would never have known this, but you're the reason I decided to start a blog – because I read yours and love it, and feel we can all learn from one another and that there in strength in joining hands in the journey. Love you.

So thankful for you, Meribeth – and the fact that God has perfect timing and always seems to plant you and I in the grocery store at the exact moment that one of us needs it. I stand amazed. And it helps me to see that, of course, HE can be trusted!

Oh my sweet, sweet sister in Christ… all I can say to your post is this: save me that blue Adirondack chair next to yours by the lake and I'll bring the wine and together we'll laugh and love and grow and cry and discover the beauty of God.

Michelle! Sister! What a blessing and an encouragement to read your reply – all the way from Uganda! Any chance you know the Luckey's? Great friends of ours. What a great God we serve! Thank you for your prayers – we are definitely feeling them!

Hey Kathy! Thanks so much for your sweet words. I'm blown away by all the “connections” and the ways that God is revealing Himself through this. Who would ever ASK for pain and suffering to draw closer to God? – and yet, that is exactly what it takes sometimes. So I guess I accept it. Morocco was awesome (and hard) and Guatemala is next. Your name is at the top of the sign up list… (which is only in my head at this point – but we must start somewhere!)

Hello Julie! Wow – I would have never believed that getting an incurable disease would have opened up so many doors of reconnecting with wonderful people (you!) and finding all the many, many ways that God is at work amongst us. Your words are encouraging and just seeing your name on this post brought a smile to my face! If I ever do get around to publishing that stinkin' book, you may get a chuckle out of the part where in kindergarten I meet my first Catholic friend (Chris) and don't quite know what to make of her. I love that memory because it was the beginning of learning just how big God is and just how much I don't know. But I'm loving the learning journey. Blessings to you, Julie!

Thanks for those hugs and prayers, Brenda. There's a little bit of grey paint way up at the ceiling line that peeks behind the pink paint in Yulisa's room – and when I see it, it reminds me of you guys and I get a warm feeling for the years you cared for this house. Blessings!

I absolutely remember you, Marla! And those memories all seem to be peppered with lots of laughter – am I right? Thank you for commenting and bringing those memories to surface! And thank you for reconnecting me to Diane – what is her married name now anyway?

Hello Jeane! Yes, I too would have to say I wish I were not a part of this sisterhood – however, I must admit it feels better to know I am not alone. And you're only in Kentwood! I definitely plan to join the LAM foundation and meeting others via Facebook. Thank you so much for reaching out to me! I also smiled when I realized the name of my disease is actually a constant reminder of WHOSE I am. Cool. My e-mail is: cdbmaroc@gmail.com. I look forward to keeping in touch!

Wow, Judy – you just made me tear up with those memories! Oh my word! Do you have any idea how hard we worked on that stinkin' hockey rink? We would flood it, then wait for a freeze, then flood it again for smoothness, then shovel the snow, then the ice would break, so we'd flood it again and wait some more… oh my! And then the boys would skate for like 15 minutes and get too cold and have to come inside! Hahaha! What beautiful, wonderful memories of our lives “in the Grove”. All of them – beautiful memories. And here's one for you: When Andy was born you were the first person who brought a meal over to our house and I was shocked – I didn't know that was a typical, generous thing to do for a new mom. I remember thinking, “Judy Baar has to be about the nicest woman around. How did she know EXACTLY what I needed???” Oh the many, many ways God is creating an intricate tapestry as He weaves our lives paths together. I don't want to die, that is for sure, but I can get pretty excited about a chance to finally see what that tapestry really looks like!

Hello Ms. Pause: I can't tell who you are from this post – but I know what you mean by country neighbors… in “the Grove” we were all neighbors. And thank-you for sharing and reminding me we serve a God who is also a Physician. Incredibly good news for the sick!

Okay, so, do you mind if I say, “I love you” even though I have never met you??? Your post is probably the most encouraging thing I have read since hearing about this wicked thing called LAM! It wasn't that my doctor was pessimistic, but she wasn't exactly optimistic either – and the words that just hung in my brain for the 3 hour drive home were: progressive, degenerative, incurable and eventually, terminal. She would not, however, give me any timeline at all – and just kept saying it depends entirely on the rate of progression of the disease. I get doctors. They have to be diplomatic or they get in trouble. But I was feeling incredibly afraid that day because the numbers I kept seeing on the internet gave life-expectancy generally between 5 – 15 years and I would have LOVED for her to tell me your stats and that life expectancy is more in the upper 20's! She also told me to stop reading things on the internet. Just as you've indicated, my doctor said most people don't know what they're talking about regarding LAM on the internet and I shouldn't get my information that way. But I couldn't help myself and I continued to research from sites across the US, Canada, France and the UK. I didn't come across the kind of numbers you're talking about – so I would LOVE to hear more. Can you send me research links? I also don't know how long I've had this – it gets kind of muddy trying to decipher when I actually felt increasing fatigue and shortness of breath. I get a little freaked when, if I am honest, I admit to feeling this way for at least 6 or 7 years already. I'm not sure that I see it as a death sentence yet, because I really feel healthy overall – and yet I am totally living every day differently already. I guess it does feel, in some ways, as if some time clock has been set on my life. I don't really like that feeling, Susie – but I am also thankful for the new perspective it has given me. As you can see, I'm still all over the place and quite a mess… Anyway, your post and the posts from others with LAM have really encouraged me and I can't tell you how much better I feel just knowing I'm not alone. I will definitely check out the LAM foundation and the support groups. I need it. Thank you so, so much for taking the time to respond and for holding out hope to me. I snatched that hope and feel so much better already. Truly, thank-you.

Hello Cathleen! My new sister… Thank you so much for taking the time to write to me. Like I've shared with the others who have LAM, it really is such a comfort to know I am not alone. I had never heard of LAM before and knew nothing – so it was extremely unsettling at first. I, too, kept seeing the 5 – 10 years life expectancy on-line and just started crying out to God to let me at least see my youngest graduate from high-school (she is 12 right now). As I'm researching more, I'm starting to see there is no text book answer to those difficult questions and so I'm just going to trust in God's sovereignty. What more can we do??? I am so sorry to hear you had to leave your home and change your retirement dreams – but I do know how beautiful Asheville is! What a comfort for me to hear you use the word “thriving”! Wow, Cathleen, to thrive in this life is more than most people even dare to dream. I believe that despite having LAM, I too, can thrive. We will be thriving LAMS! Blessings to you, Cathleen!

Hey Mike – Thanks so much for the encouragement. You're right, this has been a really rough couple of years for Paul and I – and yet, we've never felt God's presence more intensely… one of those paradox of life in the kingdom, huh? Glad to be on the journey with you and the Mars family. If it weren't for Mars, I wouldn't have DARED suggest sharing a glass of wine with a church elder!

Cindy, I am so saddened by your news and am sure that I do not have the right words to say. One thing I want you to know is that I have always had the utmost respect and admiration of you and Paul. You are two people who “walk the walk.” You are unbelievable in your character, and I have been blessed to know you.

What a precious gift of writing you have! Words that challenge and encourage others while sharing your deepest pain. Your bucket list should all of ours, to pour ourselves out as unto the Lord until there's nothing left.

I am an adoptive mom of 3, bio mom to 2 and it's been a long, hard 13 years. Like you said so eloquently, everyone has a story. I tell mine on my blog and have connected to many other adoptive moms who have wounded children and are lost in the battle for their hearts. Thank you for encouraging me through YOUR story. God bless you.

Cindy, Stumbling through the internet this morning and found your blog. I have only recently met you, and only seen you a few times, but I felt from the beginning that you are someone to get to know. I could see a story that I need to hear. I'm so sorry to hear of your illness and I will pray for you and your family to be carried through these years, however many there are. Thank you for sharing your heart and giving this account as a gift at a time when it would be easier to circle the wagons. Peace be with you. Dotti Delffs

Hey Cindy. You are an amazing, beautiful woman of God and I am so blessed to know you. I am full of different emotions as I read your blog and some day soon would love to be one of the women who sits with you over coffee, or some wine, and share our hearts while laughing or crying. You just radiate Jesus and it comes through all of your beautiful words on this page once again. The “first death” of the the news happens to us and the “second kind of death” happens in us….it is a death we bring upon ourselves if we refuse to be transformed by the 1st death. You will not die but you will LIVE because your response to the loss is not only transforming you but others. Your presence just “brings life”. I am reminded that you are on God's calendar and that sickness will not take you home but HE will when he is ready and you still have life in you to bring life! I too thought when I read this, when I think of the word “LAM” I think of “The Lamb” who has already completed everything for you, to offer you everything that you need. And you are so precious and loved by HIM and so many others. We love you and your family. You all have always held and still do hold a very special place in our hearts. Thanks for sharing your heart Cindy, you just make me smile. Praying for you and anytime willing to pray with you.

Cindy, I cried through most of your story, both from the pain you and your family is enduring but also because of your unfailing love for our Savior Jesus Christ and the Hope that you have in Him. My prayer is that you are able to touch innumerous folks with your story and His, and that many will be saved by this life changing situation. You will be in my prayers and I am thankful that our Hope is in the Lord, not in this world.

Cindy, I do not know you but came upon your blog when a friend shared it on FB-she also has LAM! I share your love for Jesus Christ and have been blessed by your words and your heart! Our son was in a near fatal motorcycle accident and a friend gave me this verse-it is my “go to” verse. It is Isaiah 26:3 You will keep in perfect peace him whose mind is steadfast because he trusts in YOU!